The Unadulting Society

My mom has dementia. I've been her primary caregiver for three years. My daughter is fifteen. I'm forty-six. I'm the middle of a sandwich I never ordered. Here's what I don't say out loud enough: sometimes I resent her. My mom. The woman who raised me. The woman who taught me to read when I was four and came to every school play and made me feel like I could do anything. I resent her now. And then I feel like the worst person alive for feeling that way. She doesn't remember what she ate for breakfast. She asks the same question fourteen times in an hour. She gets agitated at sundown — the medical term is "sundowning," but that clinical word doesn't capture the pacing, the crying, the way she looks at me like I'm a stranger who's broken into her house. Every. Single. Night. My daughter does her homework with headphones on now. Not because she likes music. Because Grandma might start crying and it's easier to tune it out. My fifteen-year-old has learned to make herself invisible in her own home. What does that do to a person? I don't know yet. I'm too tired to find out. My sister lives three states away. She calls once a month. "How's Mom?" That's the extent of her contribution. She sends money sometimes. Money doesn't sit with her when she's scared at two in the morning. Money doesn't clean up after an accident. Money doesn't hold her hand when she forgets who I am for the fifth time this week. Last month I hired a respite caregiver for four hours. Just four. I went to a coffee shop and read a book and cried in the bathroom and it was the best Tuesday I've had in years. I felt human again. I felt like a person with thoughts and feelings and a life that extended beyond the walls of the house where my mother is slowly disappearing. And then I felt guilty for feeling good. The guilt is its own full-time job. Caregiver burnout is not a metaphor. It's a medical condition. The stress of caregiving shortens your telomeres. It raises your cortisol. It increases your risk of heart disease, depression, and premature death. We are literally dying from this work. And nobody talks about it because caregiving is supposed to be noble. Sacrifice is supposed to be beautiful. But there's nothing beautiful about being so exhausted you can't remember the last time you slept through the night. I'm learning to take the breaks. I'm learning that four hours at a coffee shop is not a betrayal. I'm learning that my mother — the version of her that still exists somewhere in that failing brain — would not want me to destroy myself for her. She would want me to live. She taught me how to live. It's the cruelest irony of this disease that she's forgotten that too. If you're a caregiver, I see you. The resentment and the love can coexist. That doesn't make you bad. It makes you human. Take the four hours. Take more if you can. You can't pour from an empty cup and your cup has been empty for a while. The guilt is lying to you.